This blog is dedicated to discussing the ups and downs of a family with a child who has Mitochondrial Disease. A blog seems to be a good way to share our experiences as a family and to hopefully connect to others with similar experiences.

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Wednesday, April 30, 2008

I wanted to post an update outlining what Roxie has accomplished in the past few months. Some of our friends don't see Roxie on a regular basis and several of you have inquired recently about what sort of things Roxie is up to these days. She turns 5 and a half in just a few weeks (her half birthday is her Dad's birthday) and she is growing in new ways and making impressive strides. And she's done it all since recovering from her illness and hospital stay in January. Not only did Roxie reach her baseline (her standard level of health and strength) as the doctors hoped but she has surpassed her own best.

Guess what?! Roxie can now crawl -- up to 6 feet on a regular basis and it is the cutest thing to witness. Just a few months ago Roxie could not crawl an inch and mostly rolled to get where she wanted to go. Now she will crawl 3 or 4 feet usually to get to someone and then she'll lunge up onto that person's lap. Sometimes when the girls are watching a show in our family room Roxie will crawl to the TV and press her nose against the screen, much to her sister's dismay. A sibling tiff often ensues in the form of McRae pushing Roxie out of the way while Roxie laughs hysterically. Watch out little Sis, Roxie's on the move!

And as some of you have recently seen in a photo (shown here), Roxie can now stand up when leaning against a wall for up to a minute and a half. And we don't mean that she is standing while holding our hands or with help from anyone -- which is why she isn't smiling in the picture. Standing is very difficult for her. Considering her profound hypotonia (low muscle tone) this is quite a feat for Roxie.

Plus since late January Roxie has eaten a normal diet. Before her stay in the hospital, she was on a sort of low GI diet, which was a step up from her ultra-restrictive Ketogenic Diet. Now she eats pizza, pasta, sandwiches, cookies, ice cream and lots more. And wow does she love food! She'll even feed herself using her hands, although this can get a bit messy.

But wait there's more ... Roxie also uses the potty every morning after breakfast and every evening before bed. We hope someday she'll be able to let us know when she needs to go but for now this is a big help.

As you can see Roxie continues to make strides. They may seem like small steps for a five year old, but each improvement or new skill tells us she is moving in the right direction. Roxie also has a new CAP worker, Farrin, who works with Roxie 3 or 4 days a week at our home. We hope this extra attention and reinforcement will help Roxie progress even further over the summer as we try to prepare her for Kindergarten!

Saturday, April 05, 2008

Last night, Kate and I made some popcorn and watched E.T. for the first time in at least 20 years. It's amazing how different it was to watch it as a thinking, questioning adult -- seeing all the allegorical stuff and being very "intellectual" about everything -- versus as a child watching for sheer entertainment. About halfway through the movie, I realized that I wasn't deeply invested in it; I was pretty much analyzing the movie from afar, as a remote observer.

But like all classics, what makes them classics is their ability to reach audiences on a very deep, meaningful level. Classics hit on enduring themes: betrayal, loss of innocence, reaching common humanity, etc. As a somewhat emotional person and the father of a child with special needs, I tend to tear up in movies more than the average Joe. Little things tend to trigger some emotional response, and often I can't say why. With E.T., the reason was clear.

It happened when E.T. is dying and Drew Barrymore's character, Gertie, is shown standing alone watching the doctors rush all around E.T. trying to save his life. My wife and I had commented earlier in the movie how much McRae, our 3-year-old, looks like Drew Barrymore's character, and I guess with that and the scare we had back in January with Roxie in the back of my head, I just started bawling. I don't mean some wet-eyed, sniffing cry ... it was an all out meltdown. I completely lost control. Just when I'd think I could stop, something else would occur in the movie that really hit home. I was immediately and fully invested in the movie, but on some parallel, personal level.

I wasn't just seeing the parallels between the movie and our life ... in my mind, the scenes I was watching were happening to our family: Gertie was McRae and Roxie was E.T. To me, Gertie watching E.T. being worked on by the doctors was Roxie lying on the floor of our foyer being tended to by paramedics that morning. The doctors surrounding E.T. were the same as the doctors surrounding Roxie in the E.R. trying to stop her seizures and then again in the Pediatric ICU trying to get her to breathe on her own while Kate and I stood by helplessly. E.T. is an alien, misunderstood, and cannot communicate in the typical way humans do. Roxie is a very different child and has alternative communication techniques. And on and on. The similarities were so exact and so many of them were happening at once ... so I lost it.

I think a lot of parents of medically-fragile, special needs kids would have the same reaction. We fret over whether we are doing everything we can to help them live and thrive. We dwell on whether we are helping their siblings understand and cope and be strong. We worry about the unknown futures for our families. And we grieve, whether we realize it or not.

And sometimes it comes out in the middle of a movie when we least expect it.

Meet Roxie

Roxie turns 9 in November of 2011. Although she has had to work hard her entire life to learn basic skills like sitting up or using her hands, she is a happy little girl. Roxie has Mitochondrial Disease which has resulted in profound hypotonia, epilepsy, sensory integration disorder, cortical vision impairment, and fragile health. She loves music, her family, and interacting with other children.